Taking Care

Acknowledging family as they age

The strength of a parent

She pushed through the crowd of bodies and quickly maneuvered her way around aisles filled with grains and vegetables and spices of every size and color, grabbing what she needed and throwing it into her basket. She turned around to ask her mother what else they needed but found herself staring at empty space. Confused, she searched the store and found her parents still shuffling their way through the entrance. It dawned on her then.

My parents have grown old.

Up until then, AP Chemistry teacher Kavita Gupta had always seen her parents as stoic and strong. It had always been them taking care of her. While she has five older siblings, the age gap between her and her next oldest sibling is nine years, so she essentially grew up as an only child. Her parents became her best friends, her pillars of support, her sources of strength. But when her father was diagnosed with a long term illness early last year, the consequences of old age — which Gupta had first witnessed at that supermarket only a few months earlier — grew more severe. Her father found it harder to walk without someone by his side and he began having intense coughing fits. Her mother, too, grew tired and weak, unable to walk in the grocery store without a shopping cart to support her and no longer energetic enough to do her normal tasks. Eventually, there was little that they could do without assistance.

“That was my moment to realize, ‘I’m the adult in the situation. I need to do for them what they did for me when I was younger,’” Gupta said.

Suddenly, she was the one cooking their meals and checking up on them every day. Last fall, she would pack up her things and drive to Porterville every other weekend to visit her father, who had been put in a nursing home. While managing all of this, she also wanted to keep her mother company at her brother’s home.

It was a tough schedule to keep up with, but she persisted out of love and dedication. Her parents, so accustomed to the food of their culture, did not have a palette for American food, and the frozen versions of their hometown’s dishes proved to be too heavy with cream and fat to be digested by their stomachs. Gupta knew the importance of food to her parents and so she put in the effort to cook and freeze all their meals for them, knowing that it would brighten their day and show she cared.

“They’re used to a different structure of life, different kind of food, which is not easily available outside,” Gupta said. “And I’m also [an] indulgent daughter. So I did not have to, but then I wanted to because I know my dad’s a foodie, and he likes this and he likes the way I cook it … so I’ll go indulge and have fun. It was just nice.”

However, in terms of family relationships, Gupta noticed that her parents’ situation placed some stress between her and her siblings — each of them had their own idea of the best way to take care of their parents, which only to made it harder to make decisions together. Still, Gupta is glad to have her siblings by her side through this tough time, as they provided a form of comfort and support. Her family turned to one of Gupta’s older brothers, who happened to be a doctor in the U.S. to guide them through the process of learning to take care of their parents.

“There is a lot of support — my sister and I will talk all the time. We were there for each other, [and] my brothers were the pillars of strength,” Gupta said.

Like Gupta, Erica Grant, Community Outreach Specialist for the Alzheimer’s Association, is familiar with the strain that taking care of an elderly relative can place on the family, especially on the caregiver. However, this is a pressure caregivers are susceptible to, no matter the disease they may be helping treat.

“I think that, you know, the idea of caregiver stress, caregiver burnout, the importance of caregivers having self care can translate to many different diseases that caregivers are working with or trying to support and care for not exclusively to Alzheimer’s,” Grant said.

Having spent the better part of 15 years working with senior citizens in some capacity while simultaneously running a memory care — a special area within an assisted living community, designed for people who have Alzheimer’s or another type of dementia — Grant herself is familiar with this sort of emotional as well as physical drain.

When she first began working with the elderly, she felt strong emotional strain, and being new to the profession made it especially hard. Grant found herself watching as an older gentleman who she had become close with, who she genuinely adored, progressed from moderate stage Alzheimer’s to life care.

It was an incredibly powerful experience and she almost gave up there.

“Actually, I thought to myself, I don’t think I can do that. But then I realized that what we do as caregivers, the people who work with persons with Alzheimer’s disease so much,” Grant said. “It’s so beneficial and we can offer so much to them and their quality of life that outweighs the grief that we might feel sometimes.”

Gupta personally understands the grief. She affectionately remembers her father in his younger years — six foot two, good looking, well paid. He was sharp, knowledgeable and well read. It felt strange to see him shuffle around with a walker, burst into coughing fits or lie in bed with feeding tubes coiled beside him.

“We weren’t prepared for it. I think the biggest transition that happens to children, which you only realize when you’re going through it, is the role reversal,” Gupta said. “You are so used to seeing your parents, you look up to them, they’re always healthy, they’re always doing things for you … When you reverse those roles where you’re the caretaker and they are dependent upon you for pretty much everything … it’s an emotional place to be.”

Although her parents may not be as physically strong as she remembers them to be, there is still a certain strength that Gupta can see in them — the strength of their love.

“You always see your mom and dad is very stoic and together and they’re adults. They got it,” Gupta said. “But while all of that has changed, one thing is still the same. They still give me strength and they still inspire me and they still love me.”

Changing facets of love

She used to throw books at him — because that’s how much she loved to read, how much she loved to share her love of reading. To love something, however, does not guarantee its permanence.

Because the books she had so voraciously read dwindled to dull picture books, and advanced, sophisticated vocabulary, too, soon took its leave, until the Scrabble board was tiled with the simplest of words that had to be painstakingly sounded out. Because the rapid discussion subsided to complete silence. Because that toss of the book, so charged with energy and purpose, scattered into mindless, compulsive rubs of the kitchen counter with a used and snotty tissue. Because now he, the child, was raising her, the parent with Alzheimer’s.

At first, it was meant to be a winter stay on the West Coast. The weather in New York was entirely too harsh for their aging bodies, Assistant Principal Andrew Goldenkranz says, and so he welcomed his mother and father to his home across the country for the season. Back and forth, back and forth, his parents traveled from east to the west, eventually deciding to settle with their son, who then settled down in his own way: no longer did Goldenkranz spend nights out at restaurants or dates with friends, choosing to stay home with his parents instead.

He did not complain. His mother is a compulsive cleaner, but whenever she scrubs the table furiously with her tissue, he’ll joke, “Mom’s cleaning!” Then, he’ll replace the snotty tissue with a fresh one. She’ll continue cleaning.

“Well, she pushed me around in a stroller and changed my diaper and cut up my food when I was little, so now it’s my job to do that for her,” Goldenkranz said.

Things had been different. Roles had been different. She was the authoritative presence at his side, and he, one of five boys, now recalls the years of homework at the kitchen table and the Saturdays where he was dragged off to the library, returning with a thick stack of books. Presently, he is the structure in her life: sometimes, she becomes frustrated, looking at him like she doesn’t remember.

“The reason is that when you’re raising kids, when you look at the things that kids have trouble doing, they’re going to sort of learn them and they’re going to get better at doing them and become more independent,” Goldenkranz said. “Whereas here, they’re never going to learn them, right? And it’s going to get progressively slower and missing and missing and missing.”

Erica Grant, Community Outreach Specialist for the Alzheimer’s Association, emphasizes how the disease is simply going to become more and more challenging until round the clock care will be needed. A progressive disease, Alzheimer’s often results in caregiver burnout, due to the caregiver’s constant support and care for their patient or relative.

“You know people feel guilty,” Grant said. “Like if they do something for themselves [they think] that they’re not giving 100 percent of themselves to their loved one and sometimes it’s essential because maybe they don’t have someone [else] to come in and relieve [their loved one].”

As a caretaker himself, Goldenkranz has to cope with the worsening condition of his mother’s disease, and he’s picked up a few tricks along the way. Instead of challenging or urging his mother to confront her problems, like the compulsive cleaning and the snotty tissue, he diverts her attention to something else. It’s a learned skill, a strategy to fend against Alzheimer’s: channel the intense attention to a different task at hand, divert their actions and thoughts to something more sanitary — in the case of the fresh tissue — and more safe.

It’s painful for her husband, Goldenkranz’s father, who does not have Alzheimer’s, but struggles to distance himself from the emotional and physical absence of his wife. He’d lost his competitive Scrabble partner of 65 years as she became someone different in many ways, staring out into space, just as the spaces of the New York Times crossword puzzle they used to do together were left blank, untouched by slashes of dark pen.

“He was 21 and she was 19 [when they married]. So it’s been a long time,” Goldenkranz said. “It’s losing the person that he spent his life with. Just you know in terms of the conversation and the behavior and now physically losing her, separating from her physically, and then when she passes away he’s going to have to grieve a third time.”

Thankfully, neither he or his father are isolated in their grief. They attend an Alzheimer’s support group for caregivers. And so they gather around — not to establish guidelines or training – but to sit and listen to others’ struggles.

Still, it’s hard. At first, his father used euphemisms to cope. He refused to used the term “Alzheimer’s” to reference her condition, watering it down to “aphasia.” It was a conflict between brain and heart, a conflict between confronting reality and remembering the past. He was determined to be the rigid provider, the one to set conditions for the family and for others to rely on.

“For a while, I would try to talk him out of it,” Goldenkranz said. “But finally I realized, ‘You can use whatever vocabulary you want to use, Dad. It is what it is. Right, it doesn’t change the reality of what we’re looking at.’ So he had his kind of crutches and safety nets that he needed to rely on.”

Reality was unforgiving. It intruded in the form of homecare for four hours a day, the need for someone to put her in the bath, cut up her food and change her diaper. Duties she had always done for Goldenkranz, when he was the child and she the parent.

They couldn’t take care of her any longer.

The familiar clash between brain and heart happened yet again: it was essential for her to seek care from an outside facility, a cold, hard fact that both son and father had to comprehend, yet his father could not give up on “the person that he spent his life with.” Nevertheless, Goldenkranz and his father began to look for care facilities, looking for a location near their house and avoiding the the more impersonal ones.

Nowadays, she lives in a care center just five or six minutes from their house. His father visits religiously, several hours a day, and Goldenkranz every other day. His brothers visit every few months. They see the regression — and perhaps the improvement — in snapshots. Living far away, they provide more anxiety than effective support. Goldenkranz sees the day to day progress and nuances of change; his brothers can only see the results on the “report card.”

“It’s not that one’s right and one’s wrong, it’s just that they’ll give you, you’ll get a different sense of what’s going on,” Goldenkranz said. “So I think that’s part of it so they get frustrated because they come and they see what they view as more dramatic changes because they see it more irregularly, and then it’s not frustrating, but it’s kind of heartbreaking.

With the weight of caretaking on his shoulders, he sought the advice of his uncle and cousins, who he dubs his “gods,” as they had taken care of his aunt who endured a similar trajectory of Alzheimer’s. In the early stages of the disease, he’d regularly check in with them for guidance. Now, he repays this good deed: his mother’s side of the family and his father-in-law, the latter in the beginning clutches of Alzheimer’s, have turned to him as their guiding light.

“And so I think that’s kind of how it is,” Goldenkranz said. “You’re the apprenticeship, and then you have to go through it yourself. And then you get to somebody else so now you do it. So there’s a beauty and a dignity to it, but it’s hard ... it’s a tough subject and I appreciate your being a part of it.

Grant recognizes that the most important quality to being a caretaker is to interact with a patient without any judgement on their situation. If someone is sad, refrain from telling them not to be sad.

“I know it doesn’t make me feel better if someone tells me, ‘Don’t be sad or don’t be angry,’” Grant said. “I usually just want somebody to say, ‘Hey, I get it. You don’t feel good, or you’re upset, that is upsetting.’ I think it’s better to be agreeable to people’s emotions and validate that that’s how they feel. It shows empathy and it shows that you care and that you’re listening, rather than trying to tell them how they should feel or shouldn’t feel.”

Goldenkranz portrays this kind of empathy to his father, who he casts most of his attention on. His mother, after all, is receiving wonderful care at the facility, and it’s his father — forgetful of what he ate for lunch, yet strikingly clear on who played third base for the Dodgers in 1941 — who is starting to also slip notches. In regards to decision-making amongst the family, regardless of the intervening debates and arguments, his father gets to make the call and Goldenkranz will fully acknowledge and back them up: he considers himself the confidant, the lieutenant for his father. Babying his father is something his brothers are more inclined to do.

“He’s a fully grown, functional human being, and so I’m very conscious of part of what we want to maintain is dignity and agency, which is the capacity to feel like you’re a functional human being,” Goldenkranz said. “And being able to preserve that on his part.”

Yet sometimes, Goldenkranz will ask him if he needs the family’s cattle dog dachshund mix, Eddie, to comfort and sleep with him. His father will decline.

The Scrabble set remains untouched. His father still does the crossword puzzle, but it’s not everyday. But a little hug or a kiss, a touch on the shoulder — and she’ll respond.

Accepting the reversal

He watched his mom transform from an energetic second grade teacher into someone whose relationship with him was like that of a child, unable to bathe herself or remember her belongings, stuck in her room because she was unable to safely live on her own. And Student Advocate Richard Prinz watched her fight a losing battle to keep control — control of her muscles, her memory, her independence.

“I started doing her bills and then she kind of fought that,” Prinz said. “She felt like she was losing her mind and ‘I’m not crazy.’ It was just really hard for her to adjust to letting somebody else help her. She was always helping other people.”

Grant explains that seeing a loved one’s health deteriorate is one of the biggest struggles for the families of patients she helps.

“Feeling that they’ve lost their loved one in disease, progressive to moderate or even late stage, and they can no longer recognize them or even details about their own lives,” Grant said. “I think that that’s one of the biggest struggles that families have is that grief for the person who was, and really is, no longer able to express.”

However, Prinz couldn’t simply linger on the grief: part of keeping his mother happy came from making sure that she didn’t dwell too much on her condition. Prinz made sure that they conversed about the things she felt comfortable with.

“I’d ask her questions about my work, you know, and how best to deal with situations with administrators because she was a teacher for so long, you know, how to interact with administrators, how to work with kids,” Prinz said. “She loved looking outside and she’d say, you know, ‘Only God could make a tree,’ so it was like getting her to to enjoy the scenery and looking outside and just get her mind off these things that that worry her.”

Even though his mother was embarrassed about the role reversal, Prinz felt that this was him repaying her for all the things she had done and sacrificed for him brought the two of them together.

“She said, ‘I should be embarrassed right now, but I’m not,’ so over time we got to be very just accepting of each other and open with each other,’” Prinz said. “Sometimes those situations bring people closer together. I think that’s true about my mom and I.”

Catching the flames

She came home to the smell of burning cheese. It was late in the afternoon and she had just come home after a long day at work. MVHS librarian Laura Utile asked her mother if she was cooking anything.

“Oh, I’m making grilled cheese sandwiches.”

Utile entered the kitchen to find the stove on fire. Her mother typically puts cardboard in between the gas and the stove cover so that the plates don’t scratch. But this time, her mother forgot to take the cardboard out as she turned the stove on, which consequently lit the cardboard on fire. Utile was quick in putting the fire out, but that wasn’t enough to make her feel that her parents would be completely safe on their own.

Utile became more vigilant around 2013, when her mom was first diagnosed with Multiple myeloma, a form of cancer with plasma cells. Utile realized that after that incident, many more can occur and was sure to take the proper precautions like changing the fire extinguisher and giving very specific instructions to her parents when they were doing a task.

Living in Modesto with her daughter, Utile took interest in the librarian position at MVHS and decided to move in with her parents in Cupertino to take care of them. Her new position made it really easy for her to visit her parents and take care of them.

“When I applied for at the position here, I could not commute from Cupertino to Modesto every day,” Utile said. “I didn’t want to make my daughter move because she was in her senior year of high school … [I had] to stay [at my parent’s house] during the week and she can stay at her dad’s house and then on the weekends, I’ll go home so that I can see my daughter and then it’ll kind of get me used to her getting ready to go off to college.”

Although it’s not ideal, this situation worked out well with Utile’s mother’s recent diagnosis. Even though the commute was hectic, it was very convenient and helped Utile manage both situations.

“It kind of worked out, and at that time, my mom was had just been diagnosed with multiple myeloma and they kind of needed people to kind of check in on them but they really wanted to do everything themselves,” Utile said.

Even though her parents did not want any help, she started to check in on them and slowly it became a habit for Utile to check up on her parents.

“So this was kind of a way for me to kind of be at their home, be able to check on them with them thinking they were helping me,” Utiles said. “And we were kind of both kind of helping each other at the at the time, but [by] being there. I was starting to observe more things that they were needing help with.”

Utile’s mother was always the manager of the checkbook, but one day she asked Utile for help. But when she opened it up, Utile realized that her mother had not kept track of the checks for six months. Her mother had been an accountant for years, so Utile knew that something was off.

“[I] realized in trying to calculate it that […] that’s actually one of the signs of Alzheimer’s,” Utile said. “They start not having the ability to do things that used to easily be able to do. And so she then went in and also got diagnosed with early onset onset of Alzheimer’s. So it was kind of a double part of it was the chemo treatments that was causing her brain not to quite function the way it was.”

At this point, Utile realized that her parents needed a lot more help. Even though she was living with them, she still had to go to work all day and take the risk of leaving them home alone for more than eight hours. With her mother sick, Utile tried to take on most of the daily chores that her mother would do. However, since she was gone for most of the day, she relied on her father to pitch in as well, which was difficult given his age and inexperience with certain activities.

“They were starting to really need a lot more help,” Utile said. “With my dad being born in 1936, it was a different generation. So he was having to take on roles that he was not used to it. So he never cooked any meals ever. I mean, [you] would be lucky if [he could] make a sandwich, let alone cook at an actual meal.”

However, despite her strong desire to keep her parents safe and happy, they are more reluctant to accept help, especially from outsiders. From past experience with their family, it became very easy for them to accept assistance from non family members.

Due to this reluctance towards outsiders they’re uncomfortable with in-house aid. In order to resolve this issue, Utile is looking to move them into a facility so that they can get monitored care while at the same time being comfortable.

Though they are used to the comfort of their own home, her parents are accustomed to the idea of moving into a home. Her mother’s siblings, who are under care, helped convince her parents that it was smart and rather beneficial to move under care.

As of now, Utile makes pre-made lunches and dinners for her parents everyday, providing them with specific instructions of what to do with each. But there have been times where she forgets tiny steps that seem more obvious to her.

One day, Utile left dinner in a Pyrex plate and covered it with aluminum foil as she’s never been accustomed to using shrink wrap. She left a note telling her father to heat it up before eating, forgetting to include the fact that he should take off the foil before putting the plate in the microwave. Her father placed the dinner in the microwave, and of course, it caught on fire.

Over the years, Utile has slowly taken on the role of caretaker from her parents. Seeing her parents change with age has not been an easy process, but Utile describes that her relationship with her mother was better than it was before her diagnosis. In fact, as Utile was growing up, they had a rocky relationship.

Utile was growing up as a high schooler in the late 80’s, during which the AIDS epidemic was prevalent. When she was 16 years old, Utile attended her cousin’s funeral because of pneumonia. Or at least, that’s what her parents told her. She wondered how a 30 year old could die of pneumonia, but soon found out that he actually passed away from AIDS.

“It would have been just better to be honest about it and then it would have been easier,” Utile said. “They [wanted] it to shelter me from it, which I understand I mean as a kid I was angry about it and I was very mad because I just felt that I was completely lied to and so then it really put a strain on our relationship.”

Now, things have changed. Utile does in fact have siblings, but her parents mainly depend on her to get by and in spending more time with them, she has gotten closer to her mother. She goes for daily walks around the neighborhood and watches movies with her mother, but all of that is not the same as before. The daily walks around the neighborhood are accompanied with a bag for her mother to put stuff into that she finds interesting as she walks. Whether it be rocks or leaves, this entertains her mother, which puts a smile to Utile’s face. The movies are only those that Utile has pre-watched in order to be able to answer her mother’s questions about the complicated plot.

“I try to stay positive on it, I worry for my dad like my mom seems perfectly happy,” Utile said. “I mean for somebody that has both cancer and memory issues…It’s a struggle for me sometimes to constantly try to stay positive when there’s times that I want to just be negative because it does get overwhelming [just] trying to stay positive.”

Additional reporting by Rajas Habbu

Despite the distance that can separate them, grandparents remain connected to their grandkids through various ways. Whether it’s thousands of miles or just a few yards of sidewalk, technology bridges the gap. Phone calls carry messages across wide expanses of land or sea and words of endearment resound clearly. A very important part of keeping in touch with one’s grandparents is making sure that they remain a part of family life and working to appreciate their contributions to the household.

Freshman Mehaa Pushpalatha mainly uses technology to keep in touch with her grandparents and cousins who live in Tamil Nadu, Chennai, India. Frequently using apps such as Hangouts or Whatsapp, Pushpalatha can easily talk to them despite being 8,825 miles apart. Along with online apps, Pushpalatha makes sure to visit them every three to four years.

“My first trip to India after I moved to America was when I was eight,” Pushpalatha said. “We usually travel somewhere, like to the beach, to the forest and we stay there for a couple of days. It’s usually with my cousins and my aunts and uncles and my parents and… at least one of my grandparents.”

Prior to moving to the United States, Pushpalatha lived in Tamil Nadu for eight years. In adjusting to American culture, Pushpalatha visited a speech therapist to improve her English. After adjusting to speaking English fluently, Pushpalatha has become slightly rusty in speaking Tamil.

“I used to be able to read and write it,” Pushpalatha said. “Now I can’t and I kinda speak it like English, so that’s confusing and I forget the words a lot.”

Regardless of the linguistic and geographical barrier, Pushpalatha still stays in contact with her grandparents and one of her cousins speaks a bit of English.

By contrast, junior Karina Wang’s grandmother has lived with her all her life. While her mom moved from place to place as a flight attendant, Wang’s grandma took care of raising Karina and her brothers at home.

“[My grandma] basically raised my brothers,” Wang said. “I have two older brothers, so she raised them whenever my mom was on a trip, and then after she had me, my mom quit her job. My grandma still stayed around just to help out.”

Wang’s grandma spends six months living with her and the latter part of the year in Taiwan to celebrate the New Year as well as meet up with friends. Whenever Wang’s grandma makes the trek back to Taiwan, Wang and the rest of her family fly over with her to make sure she gets there safely. Wang’s grandma, despite being in her 80s, does the cooking and cleaning in the Wang household.

“When my grandma’s not here, the house [is] definitely a lot messier,” Wang said. “No one cleans it for a good two months, three months until no one can take it anymore. And then we kind of just all like get together and clean it. I’d definitely say our family wouldn’t be able to function normally without her.”

Wang’s grandma is usually very busy with the household chores that she does for the family; when she has free time at night, she watches TV to unwind after a day of working. Wang fears that her grandma’s life has become monotonous and boring as a result of this cycle. She hopes that the family can work harder at adding more variety and fun to her grandma’s life as she grows older.

“I try to [change her routine], I take her on walks or I take her to see her friend or whatever,” Wang said. “So I try to make things different for her, but my mother doesn’t really like to do that. She takes it for granted, I would say.”

Though her grandma is more fluent in Chinese than she is, Wang doesn’t feel like the language barrier between the two of them is particularly difficult to overcome. Since Wang speaks Chinese at home with her parents, she knows enough of the language to be able to hold regular conversations with her grandma.

In the end, Wang recommends that everyone make more of an effort to keep in touch with their grandparents and appreciate them, despite their occasional flaws.

“Every day, every time I see her. She’s just like, ‘Oh, are you hungry? Are you hungry?’ and then I get annoyed about that,” Wang said. “But at the same time, I know she’s just trying to keep me keep me healthy and active, she’s just trying to support me through my lifestyle. So I just want everyone to appreciate their grandparents, even if you don’t see them every day.”

Senior Priscilla Siow, like Wang, lives with her grandparents. Siow’s mom feels that putting them in a senior home would be akin to abandoning them, which is why she invited them to her home and does her best to take care of them. With that being said Siow and her brother also end up taking care of them.

“It feels normal to me, but it’s actually pretty stressful sometimes, especially with my grandpa, because he’s like 93,” Siow said. “And it is really difficult because it’s like they’re your family, but it ends up being something that is really difficult to handle sometimes when you have schools and clubs and everything else.”

Siow is closer to her grandma than her grandpa. Having lived with her grandma since birth and having only started living with her grandpa when Siow was 12 years old. This difference in time has resulted in Siow being far closer to her grandma.

“[Siow’s grandma] helped take care of me and my younger brother while my mom was working, because my dad is overseas and my parents are basically, they’re separated, so my grandma was kind of helping my mom to raise my brother and I,” Siow said. “That’s why I’m not as close with [Siow’s grandpa], because I didn’t really talk to him when I was younger.”

Although the age and disabilities of her grandparents can cause problems Siow finds that she can learn lessons from them, like how to make dumplings. Although they’re older now and travelling has become difficult Siow still remembers going out with her grandma when she was younger.

“Most [of] the things happened when I was little, but I remember in middle school and every now and then we used to go back to Taiwan and my grandma would just show me all of these fun places and take me out to the night market” “But now because they’re older, it’s kind of hard to travel with them sometimes.”